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Home / Thoughts / Sean's Thoughts / In response to comments about hope fading

In response to comments about hope fading

Written by Sean on Monday, September 8, 2008

I recently wrote "Hope, crumbling away" and got a few comments back. Instead of responding to these comments on that post, I’m doing so in a new post, because I think I might ramble on a bit and it’ll be easier to read here, methinks. Bear with me y’all.

In response to Ahab

Maybe you can try to learn to see the good thing about hope fading away: when there is no hope left, really no hope, this could be the point when you start to learn accepting things the way they are. If you still have hope you will continue to waste energy. Losing hope can be a good thing, it can be the start for something new in your life.

Ahab, you have a good point. If there were trully no hope whatsoever, I believe it might be easier to finally get past the stage I am at. If one accepts the Kübler-Ross model, there are five stages of grief - Denial, Anger, Bargaining, Depression and Acceptance. I am moving back and forth anger, bargaining and depression. Sometimes experiencing them at the same time.

Actually, I should back up a bit on that. There are two "issues" that the Kübler-Ross model applies to:

1. Having Body Integrity Identity Disorder
2. Not being paraplegic

It’s important to make the distinction here. I have gone through the entire circle several times over the fact that I have BIID. I have accepted that I have BIID. Having this condition does not distress me in and of itself. It is part of who and what I am, and "let’s move on folks, nothing to see here".

Problem is that BIID is making me need to be paralysed. And as I stated above, I have not reached the acceptance stage of being able bodied. I don’t believe I can ever reach that stage either. Perhaps if there trully was no hope, I could. But that is an hypotethical situation, and I’m sure it’s worthy of rethorics. But let’s argue for argument’s sake.

Seems to me that as hopeless as things get, there always is going to be just enough hope to be a problem. Because accidents do happen. There would not be the hundred of thousands people who have spinal cord injuries in the world if these didn’t happen. So it *could* happen by accident, as unlikely it would be to happen to me. But it could.

So, here I am, losing more and more hope, knowing that I cannot really lose *all* hope, which makes it more difficult for me to accept. Fun, huh?

In response to Dante

you’ve been dealing with this a long time. You’ve had the strength and resolve to stick around with us for this long, even if it seems painful to think of one day longer - maybe one thing that can keep you going is making a personal best each day - competing against yourself ("I lived with BIID this long, certainly I can make it through another day").

Yes Dante, I’ve been dealing with this a long time. I am constantly amazed at my own resilience. Each time I think I can’t take much more of this, I do, and keep going for a day, a week, a month, a year longer. I guess the kind of competition you describe might work for some. It’s never really worked for me though.

I’m just tired of the fight, very tired. A bit like a piece of machinery, I’m developing "metal fatigue". Yeah, I’ll keep on going. I just wonder how much longer before there’s a real crack and I fall apart even more so than I have to date.

…I’ll be honest now and say this burst of emotion from me may come from fear…I try (and have been actively trying as of recent) to keep BIID and those thoughts locked in the cellar, playing loud music over its roars, and I fear that perhaps as years pass by in my own life that I’ll come to the same conclusions that you’ve been coming to, and I guess I’m afraid of that.

Those fears are entirely natural, methinks. It’s a big f***ing scary thought to realise you might be in a world of hurt for the rest of your life. Of course you, Dante, have it "easier" (note, not easy) to acquire the impairment you need. Still, if you aren’t wanting to actualy go down that road, which I can well understand, you’ll end up fighting those demons. Locking them up in the cellar and covering up is not a long term strategy that works all that well. ‘Cuz the blasted thing will eat up your foundation and your "house" may become unstable, fall apart. The pressure can become unbearable. Especially when you’ve opened the lid just a wee bit to see "what’s cookin’", as you have.

Yet, I would tell you not to fear, and I would tell you that I have confidence that you will find your path to contentment. You have more time ahead of you. And perhaps I’m more messed up than you are :)

In response to Jen

Would it help to dig out any books you have on Buddhism or do guided meditations? I know this sounds tiny in the face of such a big problem, but sometimes a small thing can help.

I used to practice meditation a lot. Both the moving kind (Taoist Tai-Chi) and sitting zazen. I don’t recall that it helped all that much with taming the BIID dragon. I appreciate the suggestion though :)

I know it’s hard to remember when things are so painful, but there are many people who care about you.

I am aware of that, and appreciate the words of support. I don’t forget there are people caring about me. It’s one of the things that make me hang on. As the shrink I saw a couple weeks ago aptly pointed out, I have a responsibility to all of you. But it’s bloody hard mate, bloody hard.

In response to Chloe

When I was in the midst of a major depression, my psychotherapist said to me "There is light at the end of the tunnel; but you can’t see it, can you?". I said "No, I can’t". But she was right…

Thank you Chloe. I’m sure there’s light at the end of the tunnel. The glib part of me wants to say that it can only be an incoming train, but it’s an old and cliché joke which I should avoid.

There are two things at play here. One is depression. The other is our nemesis, Body Integrity Identity Disorder. The thing is, even when my depression is low, the lack of hope is present. Even when I’m able to think quite level-headedly, without the taint and negativity of depression, I know that my chances of becoming a paraplegic are remote at best. Even when I’m not depressed, I see no light at the end of the BIID tunnel, not for me. Gah, I even consider sticking my legs in buckets of dry ice. But of course, that would not help at all with my need to be paralysed, and my body image of having thin and atrophied legs, would it? I curse the mixed blessing that means it’s easier for me to appear as what I need to be but harder to become it than it is for those who need leg amputations.

Throwing depression in the mix means it’s harder to handle the knowledge that I am unlikely to ever be paralysed. Maybe it’s like adding another layer of blindfold so I can’t see the light at the end of the tunnel, I don’t know. It’s just… Well… You know?

Tags: BIID, Body Integrity Identity Disorder, Depression, Hope, Paralysed, Paraplegic, Wheelchair